On 27 and 28 June, the European Medicines Agency (EMA) hosted meetings for its Patients and Consumers Working Party (PCWP) in Amsterdam. Alzheimer Europe is a member of the PCWP, which is composed of over 40 patient organisations and NGOs from across Europe. The PCWP plenary, which was organised on 27 June, focused on two main topics: operation of the PCWP, and EMA communications. During the first half of the PCWP meeting, Giulia Gabrielli from the EMA Public and Stakeholders Engagement department presented the results of a recent PCWP satisfaction survey, which was circulated in May 2023. Next, Maria Mavris (EMA Patient relations lead) and Angela Bradshaw (Project Officer at Alzheimer Europe) spoke about ways to enhance interactions between the agency and PCWP members. This was followed by a lively discussion between EMA representatives and PCWP members – the majority of which are umbrella organisations and NGOs – on ways to increase collaborative engagement of the PCWP with EMA activities.
The second half of the PCWP plenary was focused on EMA communications. Monika Benstetter of EMA spoke about strategies to combat disinformation and misinformation, drawing on lessons learned from the COVID-19 pandemic. The spread of false messages supported polarisation of the public debate on vaccines, she explained, outlining how EMA actively combated misinformation through live streams, information campaigns and online resources. Continuing the communications theme, Christopher Gadd then presented the results of a stakeholder survey on EMA communications, which identified areas for improvement such as increasing the use of visual materials and providing translations.
The joint meeting of the PCWP and HCPWP (Healthcare Professionals’ Working Party) was held the next day, on 28 June. The first half of the meeting was dedicated to ongoing EMA activities, featuring talks from EMA experts on real-world data initiatives, electronic patient information forms, preparedness for public health emergencies, medicines shortages and patient experience data. Input and feedback was sought from PCWP and HCPWP members during Q&A sessions following each presentation. In the afternoon, the focus shifted to pharmacovigilance, clinical trials, and communications. Experts from the Pharmacovigilance Risk Assessment Committee described how the outer packaging of opioid-containing medications will be adapted in light of safety and addictions concerns, and representatives from the Danish and Dutch authorities spoke about decentralised clinical trials; studies which occur at locations other than traditional clinical trial sites.
Closing the meeting, Juan Garcia Burgos (Head of the Public Engagement Department and co-Chair of the PCWP and HCPWP) summarised key discussion points and thanked all participants, highlighting the upcoming PCWP and HCPWP meetings in the autumn. Access the meeting agenda and presentations: here and here
